Monday, March 26th was international "Purple Day." This is the color around the world for epilepsy. I sooo missed this (we did both wear purple to her neurology appointment on the Tuesday before) and did not even realize there is a young girl from Canada who started this due to her epilepsy. She wanted everyone to know that if they have epilepsy they are not alone. 50 million people around the world live with epilepsy, this is more than the number of people who have multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. Since I have a daughter with 3 (yes 3) types of seizures, and deals with them on a day-to-day basis, I need to share this website http://www.purpleday.org/, as well as the http://www.epilepsyfoundation.com/.
I have to admit, dealing with seizures daily, or even on a lesser basis is a bummer!!! There are days I wish we could have a week, a few days, or maybe even hours (on a bad day) from any seizures. That would be a dream come true! Although it is not me having the seizures, they can certainly wear on the parents/caregivers as well. Physically, mentally, emotionally, the ongoing battle with seizures takes it's toll. A goodnight sleep, a great neurologist and nurse, medications, a very loving family and LOTS of prayers, and were ready for battle the next day.
The afternoon Meggie was born I remember a friend coming to visit me and to see the baby. I asked the nurse to bring her into the room from the nursery (they had been keeping a close eye on her) and it took a very long time before they came with the baby. I phoned the nurse a second time and they came with the baby a while later. Apparently, the nurse had been observing Meggie closely after she had thought there was a seizure. This was just the beginning of a long period of uncontrolled seizure events.
At approximately 6 mos. of age, Meggie was diagnosed with epilepsy, with many seizures due to fever, illness, and things we still are unsure of. The memories of ambulances rides, hospitals, doctor's office, and many med changes, make me very greatful to be in a much better position than we were years ago. It is such a joy when you can tell the dr. things are staying more stable and their health is good.
Sharing stories of times when Meggie was seizing on the floor at the library when I was there making copies of papers. Times of running through the rain going home from the grocery store, as Meggie was seizing in my arms, or the time we rode to the hospital in one ambulance getting to the hospital, having the seizure subside briefly, just to start again seconds later. A second ambulance took us to the Children's Hospital where we stayed for a week due to her having fever, seizures, and viral meningitis. There are many more stories I could share, but I believe you get the idea. We have come a long way!!!
If Meggie were able to speak, I think she would say, she does not want your pity, compassion and understanding will due. Like other kids, she just wants to be a kid. My goal is to help educate and support others along the way, hoping we may improve the quality of life for my daughter and all individuals with epilepsy, (and those who care for them). If you know anyone who lives with epilepsy, give them a big hug, and a second one from my family.
WE LOVE THE COLOR PURPLE!!!
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